Is bronquiectasias always progressive???

[Aldo311]

I would like to know that, i looked for it on google, isn't there any way to stop the illness progression? I mean in the first stages??? Or it is always going to progress even with treatments and cares??? What did your doctors tell u about that??

[stone-UK]

Hi

Not my condition.

Interesting read for you.

bronchiectasishelp.org.uk./...

[SJoegrens in reply to stone-UK]

That is excellent information!

[Aldo311]

I wish i have never done that stupid CT scan i was so calm and doing my life, now i cant stop thinking about how many years left i have to live, even i always think the way im gonna die, i hate that stupid ct scan...

[Spacecat1 in reply to Aldo311]

I sit there thinking about why did I start smoking.but then I hear of other people with copd who didn't smoke who got it through work. With me if I didn't retain C02 I wouldn't have to wear a NIV mask all night which moves half the night and of course makes noises and keeps me awake and poor hubby gets up to try and adjust it to stop the noises. Last about 10 mins and off the noises go again. Luckily we both have a sense of humour at 2am in the morning, when the mask is beeping had it checked out s it must be me. So with co2 retention and copd and now in a wheelchair I think to myself at least I still have my family and friends and I can talk about my condition and think to myself no more wallowing in self pity you still have life and doctor's helping. I do have days were I can wallow in self pity and ask why but my hubby brings me back round. I have had copd since 2007. Just this last year with the c02 retention that's been the problem. Im hoping they come up with a better mask and machine and then I can sleep all night and not end up by lunch time having a nap. Well that's my early morning whinge done. I ca laugh about it some days. My only complaint wish there was more of a breeze outside it would be more bearable

[Hidden]

Well I have had it from 3 years old. I am now 68. Apart from the original damage My lung function has only declined in line with my age until I had an empyema and pneumonia two years ago. Then it dropped a little but has come back up. The most important thing with bronchiectasis is self management backed up by drugs, specialist help and a good cooperative GP. My oxygen sats are always 97-100.

Emptying the lungs every day is the thing which stops the bacteria growing in there, leading to a cycle of infection and further lung damage. A sometimes tedious but vital part of life with bronch.

Using what lung tissue is undamaged keeps your breathing and your body strong. Exercise, good diet, no smoking or being near other people’s smoke and germs. I am sure that having interests or an occupation, being busy with family and being determined to do everything that one’s friends do makes you feel ‘normal and stops the terrible temptation to consider oneself an invalid.

Learning to recognise when an exacerbation is starting up means that you can start antibiotics and knock it on the head. This is where you need a good bronchiectasis specialist to tell your GP which antibiotics to give you. You should have two weeks supply at home to start as soon as you need them.

So the books say it is progressive. I never read the level that I am supposed to be according to the specialist’s letter because that person is not me as I live my life and it hasn’t changed for years and years anyway. We are all different but no it doesn’t necessarily have to be an inevitable downwards slope.

Good luck and stay well.

[Aldo311]

Well my doctor said i have a good lung capacity, in fact he said my bronquiectasis are minimal, besides i dont have any symptoms described in this forum, my doctor said that my bronquiectasis have minimal possibilities to progress if i take care of my asma.

[Aldo311]

Im doing it but i cant stop thinking about the word "progress"

[Aldo311]

Yeah it was a mistake from my first doctor, then i went to see a specialist and he told me i dont have emphysema but minimal bronquiectasias

[Hidden in reply to Aldo311]

You got lucky then. Stop brooding, look after yourself and get on with a fabulous life.

[Aldo311]

Littlepom thank u for the advice, i want to move on with my life but i'm shocked, my doctor told me to calm down and that if a take care of my asma the possibilities of progression of my bronquiectasias are minimal, i want to believe that but its hard to me because i havent seen a case like mine.

[Hidden in reply to Aldo311]

It sounds as though you have a very sensible doctor.

[SJoegrens]

There is a book on Amazon.com called "Beating Bronchiectasis: How I went from diagnosis to full recovery in just one year" by Daniel Pecaut (a stock broker). This book was a gift from a friend and has been my guide to taking responsibility to my care. I was diagnosed in Sept. 2017. I follow the very restricted diet, take the supplements, walk everyday, have weekly acupuncture by a great doctor that encourages me, and everything the book and research suggests. My pulmonologist has been amazed by my progress. All he recommended coughing, mucinex, and breo. That's it. He is out of the picture now. I had MAC and have pseudomonas. I was referred to an Infectious Disease specialist who is a coach but he has never given me a prescription because what I'm doing is working. The IF doctor just helps me build my immune system naturally. I use colloidial silver in the nebulizer and the MAC was gone in the last two lab cultures but I still have pseudomonas that I am still fighting with the Bob Beck protocol my functional medicine doctor recommended. I built a team of specialists. I'm not ready to be disabled so with the support of my husband we are fighting for a full recovery. There are some lousy doctors out there and some good doctors out there too. You have to be responsible for yourself. The book was ridiculous to me at first and I was resistant, but I kept incorporating more and more in my strategy and I have steadily improved without any prescriptions at all. This is just what I'm doing for myself.

[shouty in reply to SJoegrens]

What is MAC please

[SJoegrens in reply to shouty]

Mycobacterium Avium Complex and some call it MAI.

[Hidden in reply to SJoegrens]

I saw this book a long time ago. I applaud the premise of taking control. This is the most important thing. However, the title is unfortunate as there is no way that the damage to the lungs can be cured so for some this could hold out false hope. Also I would not be putting a foreign substance into my damaged lungs. There is no proof that colloidal silver has any benefits for bronchiectasis and over time it could cause further tissue and systemic damage. Well done for being so proactive and I hope that you continue to stay well.

[SJoegrens in reply to Hidden]

My options with the MAC and the pseudomonas was IV drugs that the doctor said would weaken my immune system and leave me at risk to cancer or other more dangerous diseases. The colloidal silver was to fight these two dangerous bacteria and to give me a chance without using the IV drugs. I'm not suggesting anyone else do this. I researched and made decisions for me and am aware of risk... like cancer was the risk with the other options.

[Hidden in reply to SJoegrens]

I can understand where you are coming from. However, the antibiotics which we receive have been subject to rigorous testing and years of studies before being licensed and as far as the literature is concerned, have never led to cancer. They are a life giver for thousands, including me. I have been taking them since I was six and I have a very active immune system. Colloidal silver has had no testing or approved studies. It’s effects are not proved, nor have its side effects been followed over time. I cannot understand which kind of doctor, with any knowledge of bronchiectasis, would tell you what you have been told. The best thing for you ia that owing to your own efforsts and in the case of bronch, some luck, you are exacerbation free. As you probably know, I am always banging on about the management routines and lifestyle which bronchs should follow to stay healthy. It isn’t anything new. I was taught it 65 years ago. Until I was donated the virus that I have just had I was antibiotic free for over two years and my bronchiectasis is extensive. Keep spreading the word about management and control, keep avoiding the germs, but I would do some serious reading and thought about that colloidal silver if I were you.

[SJoegrens in reply to Hidden]

Thank you for your reply. I appreciate it. I use the colloidal silver to combat the pseudomonas that got started in the bronchiectasis mucus. The doctor was telling me about the IV's that are used to fight pseudomonas. It was going to take many many months of treatment. The type of pseudomonas that I have is anti-biotic resistant and supposedly permanent in many cases, but I was told that about the MAC too and it is gone. My focus now is the arsenal I have fighting the pseudomonas. The Bob Beck protocol is suppose to go after the pseudomonas in its hiding places in the nerves. Doctors say I have a very complex case because the bronchiectasis is complicated by the Sjoegren's Syndrome as well as being complicated by the pseudomonas bacteria. I was surprised when the MAC disappeared from the cultures several months ago. I tell myself that I must be just like Rocky and "fight the good fight." I know it is summer and I am feeling good right now and stronger than in a long while. I'm hoping for many more good years ahead. Thanks again for your feedback. I have been reluctant to post before but I have learned a lot from the sharing of so many people. Thanks for sharing your knowledge and experience.

[Hidden in reply to SJoegrens]

I think that you might be interested in the research that Professor Ian Henderson is doing at Birmingham University. He replaced the antibodies in the blood of two bronch patients colonised with pseudomonas with antibodies from donated blood. They both went on to eradicate the bacteria with their own immune system. He is right when he says that we need a different approach. I’m sorry that I am no good at posting links but if you google him he will come up. I think that they are researching the same thing at Newcastle.

[SJoegrens in reply to Hidden]

I will check this out. Thank you so much for pointing me to the additional option for treatment. Pseudomonas in the lungs is very hard to remove.

[Hidden in reply to SJoegrens]

Well they are at the beginning of the research. I have been colonised with pseudo since 1986. It can’t be eradicated once it is there. It hides and fools the lab plates sometimes but it is there. It is a case of living with it ( doing everything we have agreed on) and having abs oral or IV ( I have only ever had three lots of IV)when it gets out of hand. I find this usually happens if I have had a virus

. Many of us nebulise abs on a long term basis to keep the numbers down. I nebulise ceftazidime which goes directly into my lungs. Trying to eradicate it altogether when it is possible to live a normal life with it, is it seems to me, a head banging exercise involving far too many abs assaulting the body to little avail. I have been lucky enough to avoid MAC so far for which I am thankful.

[SJoegrens in reply to Hidden]

Thank you for your input and how you are dealing with the disease. I wish you all the very best in your fight to maintain your normal life and beat this bacteria.

[locheil]

Hi Ald,

Interesting spelling.

Bronchiectasis was progressive and in the mid 20th century the prognosis was poor now the situation is very different.As Red Sox said previously you cannot turn round the fact that the airways in the lung become enlarged and as a consequence you become more vulnerable to chest infections but and it is a big But if you act sensibly exercise regularly and have a good diet your improved immune system will go a long way to reduce infection, further more current research is beginning to impact on 200 years of the medical profession siting on their collective bottoms in this area.

My Gran had brochiectasis at a time when the diagnosis was very suspect and the prognosis unknown - she died during the night at age 94!!

Keep well,enjoy your life,she did!!!

[Hidden in reply to locheil]

Great reply!

[santisuk]

Based on having seen lots of bronchiectasis cases on another forum I would say that if your doctor has said that you have minimal bronchX (tends to be the short-cut word many bronchiectasis sufferers use) you have a good chance of a long and productive life, particularly if you have the discipline to follow the maintenance guidance of doctors and (extremely important) other patients. I was diagnosed 4 years ago; I just had the latest of my annual CT scans, breathing and blood tests. I have significantly improved over my situation of 2 years ago - better lung performance and no longer any signs of immunodeficiency.

I attribute this (in order of importance) to:

A better starting point - I was also described as having 'relatively mild' bronchX

Regular exercise - 750m swimming or 4km brisk walk 5 days out of 7

* Daily lung clearance excercises which are now reduced to less than 15 mins on my back coughing junk up and out

* A good diet generally - lots of fruit and veg, avoiding or limiting fats/fried/bakery/processed; cutting down on the alcohol (no smoking of course)

* An enhanced diet in the last year - low on inflammatory foods, high on anti-inflammatory foods, assisted by circumin as a supplement

* Not being a conspiracy theorist against pharma and not scared about antibi resistance; prophylactic azithromycin 3x a week may well have been placed at the top of this list if I had perfect knowledge of the contributory factors.

* Learning how my body is and recognising when early signs of infection are definitely pointing at a likely exacerbation and taking extra antibis only at that point.

* Probably others but this just off the top of my head.

Possibly luck is a big factor, but if you have the discipline to change your lifestyle to meet the new challenges I'll bet you'll be lucky too. Sound like boasting but rather I want to emphasise that this stuff is not always easy. As the saying goes "the harder I try the luckier I seem to get"

Loads of people live to a ripe old age with bronchX having had it a helluva lot longer than me. I expect it to eventually cut a few years off my life but expect to live a good life and see my daughters prosper (now 21 and 8 yo); I'm 67 and targetting at least 85). Be aware that patient forums like this tend to attract those who are having a tough time with their disease, but don't assume we are all heading for pain and the grave.

[peege in reply to santisuk]

Great reply santisuk 😃. Particularly love your last sentence 👍👍👍

[Hidden in reply to santisuk]

I agree with peege. A great reply.

[watergazer]

mine hasn't changed in 10 years. Keep yourself fit- eat healthily and keep your asthma under control and this will help. No one knows what will happen. I was told I could be in a wheelchair and using oxygen but the latest scan showed no change in 10 years.

[Bella395]

Aldo311 - you can’t go back so have to make the best of it. There are advantages in knowing and the main one is that you can try to prevent disease progression. The main thing to consider is preventing infections because it is these that can damage your lungs further. Also, keep your asthma under good control if possible because inflammation can damage lung tissue and can cause susceptibility to infection. Comply with your medication, particularly the steroid preventers, keep your chest clear with your chosen clearance technique, have annual influenza vaccine and ask about others e.g. pneumovax. Eat healthily and keep as well as you can. Above all, try not to dwell on the future - none of us knows how long we have.

[donut43]

Just do your best, a good diet, exercise that suits you, keeping watch, see your GP regularly knock any infection on the head. Good luck and don't worry it is not worth it !!

Dan

[Sjf129903]

Yes should have just taken the antibiotics to get rid of the infection and went on my merry way

[Sjf129903]

I get bronchitis ALL the time all year long

[Beth1949]

From what I hear from several specialists (including Mayo Clinic) Bx is progressive, BUT with proper care and meds, the progression can be slowed down.

I was diagnosed 7 yrs ago with Bx, but have had lung issues for 30 years. But, finally, after years of misdiagnoses and numerous meds, I have finally found a combination of meds that work for me.

[Aldo311 in reply to Beth1949]

I read somewhere that progression comes when u have several chest infections (neumonias, flu, tbc, etc) because every exacerbations damages lungs, but what if we take care of not having those kind of infections, i think bq can't progress. I also read that even there are some kind of BQ that never progress (only stays as scares).

[Beth1949]

You are right that with every chest infection and/or pneumonia leaves scars on the lungs. That's why with healthy eating, exercise (if you can), stay away from sick people and the right medication combo helps keep the infections away.